Fundraising, sunshine and being sensible :P A few months’ worth of rambling…

Had a pretty quiet few months for posting – I think I post less now I have more energy and am feeling well enough to be outside or with friends. The combo of more physical exercise and working five days a week now means much less spare brain time for writing! Realised it is about a year since I started the methotrexate and started to go downhill fairly swiftly. Going to be quite an emotional few months looking back over last year! Just had another guff INR test – went from being very stable a few weeks ago on a regular 6mg a day, to dropping suddenly… Dose was tweaked up and the result improved a little and now it has dropped again. Dose tweaked up even more now and back to weekly checks for a bit 😦 Only thing that has recently changed meds wise is slight decrease in pred and stopping the pregabalin (nerve painkillers) and JUST started amlodipine for my mentally high blood pressure, as picked up by Consultant in an outpatient appointment a few weeks ago. Amlodipine is fun; started off on 10mg a day and I am finding my heart goes like the clappers sometimes… Pretty standard side effect apparently. No swollen ankles yet thankfully. Never want memory foam feet again! Quite hard to decide what is bearable, but trying to stick it out until bp check next week and if it has had a big impact will see if I can get away with 5mg a day instead!

Anyway, waffly update has been slowly being compiled for many weeks now as I knew I would want to splurge at some point. One of the absolute highlights of the last couple of months was Team Toetally Awesome running variously the half marathon and the relay for the Edinburgh Marathon Festival. £1680 was raised – see Toetally Awesome on JustGiving Given that the initial target was increased to £1000 this is pretty spectacular!! James, Izzy, Emily, my wee bro Connor and Callum – on behalf of myself and Vasculitis UK, thank you so much!! Lauren (a school friend, Uni flatmate and general co-shenanigator since the dawn of time) also smashed her fundraising target, raising over £260! I am so chuffed to have been able to be there, although getting to the finish line was not easy at all. Took several modes of transport and a pretty gruelling walk to and from the bus. Even those amongst us who were super healthy were struggling – the runners were all a bit stiff and/or limpy! Mega thanks also to Mum and Dad for everything that weekend. A lot of organisation and feeding happened, not to mention the financial input…!

 

 

 

It was cracking weather whilst up in Scotland and I had a bit of a walk and a paddle in the Loch! Still can’t properly swim as the hole in my hip has a dressing on it, but saw practice nurse this morning and… I would hope as soon as next week I will be sharing a really gross picture of the healed wound! It is majorly delicate and essentially a huge purple bruise type scar, but has finally sealed over completely and now just a case of letting it toughen up a little whilst protecting it a bit still!

 

 

 

The last two months saw me starting back at work (beginning of May) on a phased return… The phased hours are now finished, so up to a new weekly max. deliberately set up as a new contract to be able to stay in work, despite having variously crappy spells. Although still getting brain tired some days, the reduced hours mean I can manage this more flexibly at home and have sofa nap time midday when required. I have essentially sacrificed a big chunk of what was already a relatively low income, in order to try and have the physical strength and stamina – as well as the mental energy and enthusiasm, to get some of my life back to normal. Was a bit of a gamble, but so far I feel like it is paying off.

I have managed to be a little bit more myself sometimes with the socialising – much more music lately! The odd local pub gig and even a cheeky night out to Lancaster to watch my faves Bad Transmission playing an excellent set! I wasn’t too worried about it, but it is taking some getting used to having nights out sober when others are not… More for the being much more aware of everyone else’s moods and people being a bit more unpredictable than how I am feeling myself. Dancing when sober is surprisingly easy when you are overwhelmed with joy at the fact you CAN! I have still found I get a pretty walloping fatigue hit afterwards, but that is really not too surprising. I don’t know how much of it is the underlying disease and how much is lack of muscle strength, but I definitely get the wobbles after doing anything exciting and my ankles are the very devil for stiffening up! Sometimes before I even get in and collapse, which means I start walking like a penguin 😀 I could hardly get up the stairs without crying at the end of last summer, so to be able to have a bit of a dance feels incredible anyway, just need to take it easy still 😉 Below pebble painting was done whilst waiting for Bad T to do their warm up, pre-gig… Note also a lovely snail called James…

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I also went down to Morecombe for the first time ever, to see local mentalists Deatbeats at a Steampunk festival – longest drive I had done for ages, wonderful company and some cracking costumes from both Deatbeats and Steampunk festival crowds.

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Another nice wee bit of news; we have a lovely new shop in town, with beautiful vintage and colourful boho and festival style clothing. Colourful and wonderful says it all really!! She was kind enough to display some of the cards a support group buddy designed, in order to raise funds for the charity.  So far over £300 has been raised by selling these cards and plans are afoot for further designs in the future 🙂

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Have had my first brush with chickenpox exposure too – inspired me to finish off making a document for the support group files that I started a long time ago. I think it was even back in hospital…?! The question of what to do if (as someone immunosuppressed/with vasculitis) you are exposed to chickenpox or shingles comes up time and time again. The file I made is visible below and even if you are not in an at risk group, it may give you some idea of just what those of us who are have to think about… GUIDELINES FOR CHICKENPOX AND SHINGLES

I also made one for what to do in the case of a suspected infection. This covers all manner of sins, but even knowing this info, many of us – myself included! – are very guilty of trying to avoid hospital admissions. Personally, I used to feel like it was giving up in a way, even when I was getting increasingly ill and was not getting any proper treatment and had a toe giving me so much pain I was sleeping in 20 min stretches. I really used to try and hold out as long as possible, until eventually I went in and wasn’t allowed out for several months! The trick being, seek advice as soon as it becomes apparent and you can maybe avoid it getting worse 😛 GUIDELINES FOR SUSPECTED INFECTION

Recently ticked off a bit of a yearly milestone – Another Fine Fest, a locally organised event on its third year now, as a celebration of our home town’s very own Stan Laurel’s birthday. Cumbria Live write up!  Lots of music all day on Saturday – was a little bit more careful than previous years and only went to see a few things to limit the walking around! Made a giant cardboard banana but didn’t actually take part in the banana parade/dancing… Highlight for sheer joy factor was the official World’s tiniest club hidden in an alleyway… Had a dose of Bad Transmission and Deatbeats… Downside was it being ridiculously hot; made me feel really shitty for a few days afterwards, with joints feel swollen and super tired. This was from even BEFORE the day of music and fun on Saturday (I napped halfway through!) and I was even more careful yesterday. I was actively wishing for rain, which would probably have DAMPENED the mood a little (heh heh)… After a few more melting hot days, it has finally had a few cooler days here with persistent drizzling today, very reminiscent of the bit of Scotland my folks live in 😉

I have plans to go see Rising Appalachia in Kendal for a tiny sneak gig later and factoring in some hefty resting to make sure I can deal with it – very excited 😀

Aside from that, trying to make decisions on things like kitchen tiles and not get quite so overwhelmed and fretty about tiny silly things like dogs barking and bigger pointless fretting about things like INR results and hair loss!! :/

 

Kath goes back to work, gets wacked on lemonade and Voldetoe gets the chop!! (…ish. Ok, not so much). ***HEALTH WARNING: Pic of toes – not too manky***

This week is week two of Vasculitis Awareness Month and it has been truly lovely to see so many people getting involved in sharing snippets of their daily ups and downs whilst living with this disease. Lovely in a weird way, as it obviously isn’t at all nice that so many people have hidden struggles, but the way some people find nuggets of optimism or fun is downright inspirational.  A lot of the quotes made by Kelly for us to all share are based on finding positives and celebrating the strengths we have, rather than sinking into a pit of gloom when we are knackered or in pain… Below are some examples! You can pinch any that you want…

 

 

On the theme of awareness, Little Broo and his lass have been hitting the streets doing a bit of fundraising for the Vasculitis UK charity, in advance of their upcoming efforts at the Edinburgh Marathon at the end of May. He wants me to make it clear that it was 90% her doing, as he was at work and joined her afterwards… An amazing £170.32 was raised bucket rattling in one day – starting at disgusting o’clock in the morning (6am) to get commuters on Cannon Street station in London! One wonderful gentleman gave her £20!

***PICTURE OF VOLDETOE A LITTLE BIT FURTHER ON – LOOKING QUITE GOOD!***

Fun things recently have included being told my INR levels – still being tested through the Finger Prick of Joy – are behaving enough for testing to move to fortnightly!! My only blood test this week was therefore for EVERYTHING for my consultant to check on. Things don’t look too bad at all – my CRP and LFT’s are a little bit worse than they were in March, but… I have dropped pred and have not had a dose of chemo last month, so I can understand that really. The one that looks a bit iffy to me is the high red blood cell distribution width vs low mean corpuscular haemoglobin – one being higher than ever for me and one being lower than ever. Not exactly massively excitingly so, but general trend would indicate I am possibly anaemic, despite taking ferrous sulphate on a pretty regular basis. To pacify anyone worried about my tendency to poke my nose into my blood test results and then visit the internet, I like learning how I work and, more importantly, I won’t be panicking or doing anything exciting medication wise without my consultant telling me to 😉 He did recently suggest I could stop the ferrous sulphate so this would maybe suggest otherwise!!

**Edit** Consultant is perfectly happy with everything – I was looking at a breakdown with excessive detail, but the overall picture is not concerning him at the moment.

Last week I got to see my favourite podiatrist (my only one as well!) for a catch up. Mainly to show her Kevin to be honest; she last saw me before Christmas whilst between admissions, when Death Toe was an absolute state, but still attached. She had a good check over everything and agreed my toes look the best they have done since I very first saw her, over two years ago now. Yay for drugs! Voldetoe is the only one still being a poo. See below… She lopped a scabby bit off that was catching on my socks and basically said I was ok to keep going as I am, and just to get in touch asap if anything starts to look suspect or changes quickly. For anyone who remembers the epic blue mottling, look at the difference! Only that one idiotic toe is still a vaguely blue shade all of the time and nowhere near as prone to being ice cold or painful. Good times!

 

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Voldetoe – look how much better he is!

 

This month was the start of me going back to work after many months off; so far it has not been too traumatic! I had many hundreds of emails, have had to change ten billion passwords and had to get IT to help me hack onto my pc at home, as it needs too many layers of passwords to connect to the network to be happy with anyone who had recently reset everything… It was quite exciting; made me wonder if professional hackers spend all day – night… Squeaking in glee at their own (IT’s…) cleverness.  So yep, phased return is going nicely. I haven’t collapsed dramatically or anything, and have remembered basic things like how to use a mouse.

The following isn’t technically anything to do with work, but a good sign that my brain is feeling more alert… There was a recent post in the support group discussing how to drop daily pred doses at a rate that people can manage, without suffering from walloping fatigue and joint/muscle pain as a physical backlash. It made me curious, so I had a little dig and tried to find out a bit more… It is a lot easier to reduce the dose at a faster rate if you haven’t been on them for too long at a high dose, but for some people that is sadly not the case. As well as a whole host of delightful side effects (moon face, insomnia and general weight gain and bloatiness (a real word from now) to name but a few!), long term steroid use suppresses your body’s natural steroid production. Cortisol is the human body’s natural equivalent to prednisolone, produced by your adrenal glands in response to illness or stress. For this reason, at around 7.5mg (depends for each person) you need to slow down the taper to allow your adrenals time to activate and get back to normal production. Personally, I noticed a sudden increase in energy (don’t be excited. I mean less sofa hours per day!) at around the 6mg mark, which I would like to think was possibly the point at which my adrenals got back into action, thus making me extra steroided up in an overlap situation (also a real phrase). Not exactly sure it works like that, but funnily enough, googling ‘extra steroided up’ doesn’t produce many peer-reviewed results 😉

ANYWAY: I made a spreadsheet 😀 I realised from this particular post that a lot of people who get to the 7.5mg (approx.) mark need to start tapering slowly (which I already knew), AND need a system to help remember where they are each day dose wise. One of the admin has previously told myself and others about a system she calls ‘dead slow and stop’ which has worked for a lot of people, particularly when dropping after a long time on higher doses, or if they are struggling to get below 7.5mg without repercussions. I volunteered to have a crack at making something to help the author of the post and my brain WORKED!! Also it meant playing with formula a tiny bit on excel, which alternates between being my most hated thing in the world and the source of hours of joy and faffing. Ta daaa! I love having outbreaks of dweebiness 😉

Dead Slow and Stop method from 7.5mg

 

 

The above and below were taken on the east side of Coniston – first proper BBQ of the year and a wander on a very nice sunny evening. Felt so good to be able to walk and carry things, and to not be in pain the entire time, or wishing I hadn’t said yes!

 

 

We also found a friend, who I named Eric.

 

 

Despite how awesome it has been to be able to get out and about more, I am definitely overdoing it with the walking/general ‘doing a thing’ some days. I am finding it very hard to settle on a consistent level that doesn’t leave me on the sofa whimpering the next day. My body really wants to move now – I am getting urges to dance and wander to the park. Some days I have two GP appointments and the walk down (maybe 100m?) used to have me in tears or asleep in the waiting room, but I am now managing there and back pretty easily, unless I am stiff from the day before. Today for example, my back is very sore and my ankles are stiff and sore, because I overdid it yesterday. I took it easy today and hopefully should feel up to careful walking again tomorrow, but it is hard to up your levels of activity whilst restraining yourself so you don’t end up a whimpering mess on the sofa :/  Some days it feels like my hip is trying to pop out >.< Knees are so much easier to crack with a gentle stretch… The only thing that seems to help move my hip back to where it should be, is some kinda of Pilates warm up back roll I learned a long time ago off Mum.

The exercises the physio has given me are largely based around strengthening my upper leg muscles again, so as to stop my knee and hip joints taking all of the impact when walking. It was obvious when she explained, but you cannot actually strengthen your KNEES! It is definitely working; so much so that last week she said I don’t need a follow up, and am just to get re-referred by GP or contact her if I am struggling! She is pretty chuffed (as am I!) with how quickly I am getting back to walking around normally, but was warning me against getting overly excited. Problem is, what for most people isn’t classed as exciting exercise, or particularly strenuous, is pretty tough on your body when you barely moved for over six months 😉 Although not to the level some people have to, I did literally have to learn how to walk normally again, as over a year of limping and walking with my foot squinted up to avoid toe-floor contact is hard to undo overnight. It also had a knock on effect up my right side, where I was using a stick for so long, which is why as soon as I was stable enough not to fall over I stopped using it!

Final mention must go to the pub. Or The Return of Kath in the Pub… I have ventured into such establishments a handful of times now since my release/Death Toe chop. We have an awful lot of them in my town, so it would actually have been quite hard to avoid them. It has also meant I can indulge in some live music, one of my all time fave things to have happen in my vicinity. Good sides to all of this? People time is ace. Music is generally ace – I am forewarned and can thus pick what I encounter. Catching up with bar staff who I haven’t seen for MONTHS is heartwarming and has even been a bit tearful in some instances. I feel a tad concerned they missed me for the wrong reasons! I am not drinking any alcohol for the foreseeable future due to the warfarin and general state of my system; partly I want to be able to confidently blame any dodgy liver function tests on the disease, rather than any intake of booze! I never drank frequently to excessive levels, but did used to like a few rums or gins… Equally though, I can happily be in a pub or around other drunk people without having anything, which leads neatly to: Complaints! On the most recent of my ventures into local nightlife, all I drank was a cuppa and a bit of lemonade – at most a pint’s worth over several hours – and I was struck with the WORST insomnia. 5am. Not cool. Lemonade is thus the enemy from now on. Coke was already on the banned list, due to me suspecting it has made me acutely awake on previous occasions. Tonic and lime or soda and lime from now on… Or soda and blackcurrant…

Now Sir Terry Pratchett and I are going to bed 😉

May is Vasculitis awareness month!! In other news: Kath FINALLY gets ‘The Finger Prick of Happiness’ [in my defence, drugs and long overdue finger pricking] and makes her first adult house decision like a real, life-capable hoomin bean.

So the below is basically me today – fingers and remaining toes crossed not tomorrow as well 😉

I went for a walk on Saturday, borrowing mad, wonderful spaniel hound (see last post for a pic!). She was an absolute delight (e.g. no pulling on the lead, or trying to submerge herself in dead-fish-sludge), and I managed a good half hour wandering in one of my fave local bits of garlic/bluebell infested woods. I remained alive afterwards (just a teensy bit wobbly) and was very smug that I had had a proper stretch, with no toe pain or collapse afterwards. On Sunday I did a bit of the outside world and went to our local art fair – Print Fest. It was wonderful to see so much variety and hear people using fancy creative arty talk (some of it made me snigger a little…), but my joints were catching up by that point. I managed about half an hour, but too many people meant too much standing still, which is weirdly worse on my hips and knees than slow walking. The rest of the day I became steadily more floopy, and my brain said “No!” progressively louder.

Today has been a bit useless. I thought about sunshine and shuddered. The curtains have stayed closed all day. Pj’s have stayed on all day. I have achieved things like doing pill boxes for the next fortnight, but only as a means of appeasing the bit of me that was sad and angry that I wasn’t feeling capable enough to leave the house. I have definitely found there is a bit of a delay with doing ‘a thing’ [a short walk in this case!] and the ‘payback’ or ‘floop’ afterwards. It makes planning things scary, with the extra frustrating bit being that I can’t really predict the level of payback to follow. I have wanted to finish off this blog post all day, but my eyesight has been really awful and it has taken me until late evening to feel like I can handle focussing on the laptop screen. Most of the day has been spent listening to audio books (The Amber Spyglass at the moment!), and trying to make sure I am not forgetting anything for the upcoming few weeks. I struggled with the eyesight problem a lot when I was in hospital – on a LOT of drugs – and was blaming the steroids and morphine. Now that they have been tapered down so much, I am starting to realise it just seems to be part of how I currently experience chronic illness fatigue. It feels almost like making my eyes work normally (e.g. focus clearly) is one of the first bits of energy use that gets sacrificed, to be put towards other more important functions – like being awake 😉 In the Vasculitis UK Support Group on Facebook, we have been discussing fatigue quite a bit, following a recent British Society of Rheumatology Conference that had a section dedicated to discussing and sharing research (or lack of!) about it. It really has a huge impact on most of us, although to varying degrees day to day, and person to person. Tellingly, most people say it has more of an impact on their ability to live a ‘normal’ life than the pain. You can get used to dealing with quite a lot of pain, but doing that itself is also very tiring. I still find The Spoon Theory one of my fave ways to understand and explain it.

The following is a little bit of an update on some of the thoughts going through my head recently. It has made this post a bit more waffly than intended, but I can also blame brain fog so nyeh. Big Little Broo recently said he was worried about me being negative about the future, or in how I talk to people about how I am doing (very lovingly), and it is something I have had to think about quite a bit in order to decide how negative I actually was being. I have had many, many lovely conversations since about all of this and I think it was very helpful for me to step outside of it all and look at it objectively for a bit. Essentially? Being suddenly ill out of nowhere sucks. It really, really sucks. I am a disgustingly sociable, chirpy, bubbly person. I get upset if someone is mean to me, cry at sad adverts on tv and get insanely mad if someone is horrible to someone I love. None of that makes any difference or helps at all. There is no textbook on how to deal with a chronic illness and you don’t know how to process what is happening to you, sometimes for many years. In my case? It was over a year before I got any kind of name for what was happening to me and for many people it is even longer. It is hard to remain optimistic and plan things when everything – and I mean EVERYTHING – you relied on, or planned for in your future is under serious threat or stolen from you. It is that whole idea of saying “I’m fine thanks!” – and lying through your teeth as you can’t be arsed seeming negative ALL THE TIME, or telling the truth and risking people avoiding you, or stopping inviting you to things, expecting you to be there, etc.  I am very lucky with my friends, but it doesn’t stop it being something that most ‘spoonies’ fret about constantly. Anyone thinking I am being negative about the future (tomorrow, next week, next year…) needs to remember that it is (mostly!) more a case of being realistic or sensible. It is a learned response that has not come easily. I have essentially had to pick up through horrible trial and error that doing ‘a thing’ leads to becoming part of the sofa, or crying in a muddy tent, in a disgusting amount of pain and shame, or being admitted to hospital for several months and losing digits. The actual loss of Death Toe was a happy point for me, which many people probably find a little deranged, but that in itself is something I need to make clear. I am still able to find things to be cheerful about. Even if that is weird things like an amputation. Writing this blog helped hugely during some of the worst bits of hospital. It was a very strange haze of pain and opioids, and if I hadn’t still been clinging to all the little amusing moments, I would have given up pretty quickly. I have been looking back through this blog very slowly in the last few weeks, a post or two at a time. This has resulted in a lot of crying, but has also given me quite a good idea of how determined I was to find things to be cheerful about. Even if that was a funny comment from a ward mate, or a slightly less disgusting meal 😉

So… The Finger Prick of Happiness? I have FINALLY had my first INR test from a drop of blood out of my finger tip, rather than a vial from one of my long-suffering veins. This made me stupidly happy. For over two years now I have had regular blood tests. From October this became pretty much a daily occurrence, with only a few weeks off until I was released (minus Death Toe!) in February. Back in February I stopped the daily injections of anti-coagulants and started warfarin tablets, which I will likely be on for life. Since then, I have had at least weekly blood tests taken to determine my INR level and dose me for the upcoming week. My veins REALLY don’t like blood tests anymore; they refuse to give any blood at all, the needle ‘bounces’ off the scarred (fibrosed!) outside of my veins, and they basically need quite a lot of time to heal after over half a year of constant abuse from blood tests and cannulas. I find myself frequently apologising to practice nurses, telling them “it’s not you, it’s me!” so they didn’t doubt their skills. This is why, having finally stabilised within my target INR range, being allowed to have blood tests through an instant finger prick dosing machine is joyous. It is hard to allocate the credit, as I have been on so many different drugs now, but given the whole point of it is to thin my blood enough to effectively circulate in my toes and fingers, I think the warfarin is working. I say this tentatively, but I am noticing slow but definite healing in Fester (the big one that likes being infected alllllll the time) and Voldetoe (painful, annoying and never quite kicked off properly). My toes are still prone to being blue and mottled, but compared to what they were like last year, the difference is very clear. The very fact I have managed to stay out of hospital (except for planned chemotherapy and rituximab admissions) since early February is testament to that. This has included fighting off an infection in Fester whilst VERY immunosuppressed, and!! Fighting off my first cold/sinus infection WITHOUT being hospitalised again *smugness* 😀  I cannot even tell you how scary a fairly mild (gross) head cold was. I was absolutely knackered and my joints flared up massively, but I didn’t hit the line I had prepared to be the ‘give up and go to hospital’ point.

Drugs! I am still verrrrrry slowly dropping the level of prednisolone and painkillers I am on. The slow drop is partly so I don’t kick-off a physiological rebellion, but also so I can pin-point clearly if a reduction is too much, too soon. I had a doubting moment the other day, looking at all of the pills I was about to take for my morning meds, and wondering if they were all necessary now that I was feeling relatively more human. Then I followed that with the amused realisation that it is the drugs that are causing that improvement. I also have to remember that they have all been reviewed by both my GP and consultant several times in the last few months alone… It is very easy to tap into that general prejudice society has towards prescription painkillers and daily pill-popping. Even as someone who is both very scientifically minded AND going to be dependent on some level of drugs for a very long time – if not forever – I still find myself questioning if they are really necessary. This is pretty much wholly due to the fact that many people (generic use of people, also meaning myself in this instance!) are uncomfortable around someone dependent upon taking drugs constantly. I reckon (and yes, I am maybe straying into hypothetical rambling here!) it is because it challenges my perception of myself as a viable human being, who would have been eliminated in a pre-drug world, through painful, septic natural selection. THE NHS IS BLOODY ESSENTIAL PEOPLE! SAVE THE NHS, SAVE KATH! (Haha, Heroes reference 😀 )

Other nice things? I have a new baby cousin!! He is absolutely gorgeous of course. That goes without saying… His older brother is a delight and a fairly frequent visitor to my current home, so much so that he has his own shelf of toys, just under the fish tank he loves so much as well. But yep, they live a little while away, so driving over there is still a bit of a mission and it took a bit to be able to meet him. The excellent bit is, I think I get to see him again this week 😀 He smells perfect and did a wonderfully loud fart.

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My other new tiny animal friend is of as yet unconfirmed gender, still being called Floof (or similar). I would imagine that having ONE kitten is a little unusual, but Ginger (I called HER Spoon when she was a kitten) only had one. It seems that she has made up for it with extra enthusiasm for that one, so Floof is massive! Fair enough Ginger is a fairly delicate cat herself, but that kitten is just over two weeks old and I shudder to think how she managed to give birth!! He/She has more than doubled in weight/size already, so being an only child is clearly paying off!

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Recent house progress (as well as Big Little Broo painting most of the fresh plaster) has included an ALMOST finished bathroom!! I have made the first decision of its kind in picking the bathroom flooring… The mental angst and trauma involved was ridiculous. I exhausted myself driving to the nearest bigger shops to compare prices and options, only to find that the smaller local firm was very reasonably priced, as well as being able to give me samples to borrow and fit it quickly. I present… My nearly finished bathroom! Note, the exceptionally large shower and sensible (yet slightly shimmery) flooring 😀 I would only have been able to squeeze in a tiny bath, so went for an indulgent shower instead. With baths being at least currently inadvisable due to constant threat of toe ulcers (only recently, Death Toe made them impossible for over a year!) and not very easy to get in or out of with sore joints, the warm soak joy is sadly outweighed by the negatives.

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The only bit left to do really is fit the taps, cupboard handles, shower door and towel rail (just out of sight to the left), and fill the space opposite the toilet with my giant plant collection! Every bathroom needs a jungle 😀 Certain friends will be very chuffed to see the size of the shower, as CERTAIN FRIENDS have been known to previously put all of the plants in my current bath/shower for funsies… It is one thing doing it for a convenient water share, but quite another to obstruct normal usage!!

As a fun little aside, don’t search for ‘book throwing virginity’ in google. Instead, search for “book-throwing virginity”… I had come across the phrase in a very convoluted click through some book reviews, and absolutely adored it. The sentence being, “Tonight I lost my book-throwing virginity” in reference to the author of the quote’s displeasure with the book she was reviewing. I sniggered at the time, as I too have had the urge sometimes to throw a book very hard. For various reasons, but normally because the author has taken an original and promising premise and crapped all over it. I just didn’t realise quite how specific I would have to be to find it again, for the purpose of sharing it with you all accurately. Regarding books, I am still skipping through the Discworld series, although my pace has slowed somewhat; firstly due to being outside and being a human being a little more, and then due to the eyesight payback floop! I am on Witches Abroad and think this is about as far as I got the last time I decided to read them in order many years ago, as it is familiar, but only just. For anyone curious about the Discworld books, I cannot praise them enough. They are so clever and witty, but in such an accessible way. They are written in third person omniscient narration, so all of the action – past and present, and the thoughts of all characters are available to the reader. Terry Pratchett then manages to weave in an extra level of inside joking with the reader, through footnotes and sly references to our history and current culture, at the unknowing expense of the characters themselves. In trying to think how to word this, I actually just found an excellent article that uses Terry Pratchett himself as the main example! RIP 😦  Third Person Omniscient – Terry Pratchett That is probably the most nerdy paragraph I have written for a while 😉

Fun junk mail snapshot for you; currently decorating my fridge as I still cannot stop laughing at how bad I am in the eyes of some people… I honestly thought it was a joke, then realised it wasn’t and felt AWFUL – then thought actually, I still find it hilarious. Note the fabulous fridge magnets.

As mentioned in my haphazard shouty title, May is the internationally recognised Vasculitis Awareness Month. It also happens to be National Arthritis Awareness Month (both osteo and rheumatoid) and Ehler Danlos Awareness Month, to name but a few 😉 This is a chance for many people in the support group who aren’t quite as vocal or… sharing! – about the condition as I am, to share a few images or thoughts about how their lives are impacted by having a chronic illness. It can be pretty empowering to break your silence on a topic, but it is also a very vulnerable and terrifying thing to do. I think most of my facebook friends are pretty used to it from me, but please spare a thought that for someone you see sharing something who maybe doesn’t usually post about their condition – physical or mental – it can have taken a huge amount of courage for them to do so. The ultimate goal is to simply raise awareness, whether in making the name and problems associated with the disease more familiar with friends and family, or in giving other people an insight into what a lot of us struggle with daily, often in silence. I am not a silent struggler myself by any means, but that has largely evolved to be the case due to the love and support shown to me by my family, friends – and the support group having given me the courage and wonderful feedback to share my ongoing story through my blog. We also have AWESOME graphics to share and use wildly, as created by our very own Ginger Ninja Warrior, despite her not feeling 100% right now!

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…and lastly, but most certainly not least in the grand scale of importance,

I start work again tomorrow!!! (Ahem… Now today…)

After being off for seven rather eventful and traumatic months – and having had a few thwarted attempts wanting to get back into a normal working routine, I am due to start phasing back in my hours from tomorrow. The plan is to go back to a lower maximum of contracted hours per week. I had already dropped them at the beginning of 2016, when I started feeling increasingly unwell and began working from home. Now I will be doing just over half of what I had originally worked, split over a five day week, with the option to work flexibly from home still available. This is dependent upon meeting productivity and quality criteria, but the reduced hours and being able to phase them back up over a number of weeks should make this a little less of a shock. It probably seems strange to many people, that working with such favourable options is scary and potentially a bit overwhelming, but I am terrified that I will have forgotten every bit of knowledge I have accumulated over several years working for the company. Hopefully tomorrow will be reassuringly familiar and the computer will behave itself. It will certainly be very lovely to see some of my colleagues again – I strongly suspect most of the day will be spent on the phone to IT apologising for how many passwords will have to be reset. That, and going through *shudder* BILLIONS of emails. I cannot even imagine how many there will be. Hopefully the vast majority are already completely redundant… *shudder again* – Urghhhhh procedure updates 😦 What if EVERYTHING HAS CHANGED??? I have always found NOT knowing the answer to anything very scary;  my wanting to research the background of the medical side of things being a good example. I am basically walking back in tomorrow to being at the bottom of the knowledge chain again. It feels like the first day at school!! Which means…

GO BACK TO BED KATH!

Yes me 😦

(I woke up again to make this longer and post it. Oops)

In which Kath is officially celebrating a year of vasculitis!! Sorta/kinda… OK, maybe not celebrating :/ Acknowledging? Bemoaning? Grumbling about?!

To start off with a brief clarification, it has been… 28 months (ish) of dying toes, joint pain and feeling shit, but a year to the day that I got a positive test for cryo 😉 A year ago today that I got given the official “looks like vasculitis” nod. The cryo label is still a rather non-committal ‘probably’ but as frequently grouched about in the past, my blood tests for cryoglobulins at any significant level are not consistently positive. That means that despite cryo being a pretty good explanation for all my symptoms, progression etc., I am currently having to be content with a label of livedoid vasculitis/vasculopathy. This is much more of a descriptive diagnosis than a specific ‘thing’ (as it relates to me anyway), but without positive tests from a biopsy or some concurrent positive blood tests, I won’t know exactly what kind of vasculitis I have. I very well may have an overlap with some other kind(s) of connective tissue disorder; APS, lupus, fibromyalgia… NO ONE WILL EVER KNOW MWOHAHAHAHA!!

Regardless. It doesn’t overly matter. I am a year on from a bit of a breakthrough moment. Someone earlier asked me if it really was something to celebrate… It feels like it. Without that positive test, even if the label didn’t stick (tee hee) (that is funny because sticky blood… maybe a bit too subtle a joke??!), it eventually led me to getting in touch with both my current consultant and the specialists at Cambridge, and to finding the most lovely bunch of nutters and warriors (many qualify under both headings) at the Vasculitis UK charity.

(Most recent doc discharging me after the rituximab called me a “very pleasant young lady” by the way. I am feeling decidedly smug about that. This is the… Fifth time I have been called this by a medical professional!! Either I am really bloody wonderful, or they need to sharpen up their variety of adjectives. Or… It was love at first examination!! Ooooo yeah 😄).

Behold! The actual post itself from a year ago (facebook post – the blog was only an increasingly repeating twinkle in my sticky blood…):

“Just had one of my first positive blood tests back (other than the occasional “oops your kidneys are a bit sick…”) and I think they have decided stupid toe death disease is officially cryoglobulinaemic vasculitis, which likes to be best buddies with things like rheumatoid arthritis and lupus (which I am under investigation for already given stupid sore joint disease).

Upshot is, it is defo autoimmune (*gasp shock horror etc*) and it is going to need long boring courses of immunosuppressants to treat it so my toes stop trying to die :/ Other possible victims as well as toes and fingers, will apparently be my kidneys and according to the internet, the best everyday treatment is to keep me above average body temperature so the bad little antibodies stay dissolved in my blood plasma and stop clotting up my digits 😀 [Mum] – medicine says I can wack up the heating :P”

By this time, I had already determined that the cold hurt; my weird purply mottling (livedo reticularis) is more pronounced when I am cold, and I get increasingly sore and unable to move if I get chilly. Other times, I feel cold when it is downright unreasonable to do so. The weekend at home in Scotland being an example; I was making the woodburner do remarkable things and everyone else was looking at me like I had lost the plot and opening doors 😀 It was quite nice to finally get some kind of diagnosis – and subsequently very upsetting to have it removed.  Until then, it was becoming apparent it was a chronic illness of some sort, and I was curious, had paid attention in biology and capable of reading and therefore it was blatantly obvious it was an autoimmune disorder of some kind. I had known it as ‘stupid toe death disease’ (or similar) until that blood test. This was the first time I let my mind focus down to any specific family of diseases. It was the first time I heard the term vasculitis. It is really bloody uncommon (ANOTHER joke!! I am on fire today 😀 ) and it was something that had never been mentioned until that point by my rheumatologist, despite her having enough suspicions to go ahead and do a complicated and fiddly blood test. I started off my research, armed at long last with a NAME for what was happening to me. A name can be a very powerful thing for validating your condition to yourself first and foremost, and then to explain and validate it to others.

Anyway. A year down the line, the prediction of toes and fingers was borne out. I have lost a toe. I am kinda happy about the actual losing part to be honest, as the dead little shit that was attached to me was excruciatingly painful and putting that bandaged foot down onto the ground (although incredibly groggy post-anaesthetic!) was one of the best moments in the last year! I have had all manner of immunosuppressants; daily hydroxychloroquine (was already on that one to be fair…), prednisolone, just had third infusion of rituximab… Two rounds of plasma exchange – five days at a time. Two infusions of cyclophosphamide. Now on daily MMF… ‘chemo-lite’ 😀 I still have functioning kidneys with only the occasional hiccup re. them. My blood tests are slowly showing a little improvement from a rather hilarious spike in LFT’s as my toe died. I am on warfarin – probably for life – to stop my blood being sludgy, and my toes have managed a few months without any more ulcers forming. THAT one is an exciting accomplishment!

My daily drug list is now pretty exciting… I found the below again a little while back, by the talented Edward Monkton. It pretty much represents my day-to-day routine 😉 When you start talking to your tablets, you have been ill for too long or are bored. It is only if they talk back that you should be concerned. That’s what they said anyway…

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I am enjoying not being in hospital for ten minutes anyway. Touching an entire wooden table whilst typing this… I got to see my OTHER fave dog the other day, for the first time since September. We were both very excited 😀 Coincidentally, the below picture of us both is from a year ago today as well 😀

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Reading my way through the entire Discworld series is going well and quickly… I ordered them all, identified the gaps and stole a huge armful from the Parents’ house. Currently averaged one every 1.5 days 😀 Quite impressed with that!! Had an utterly shite day yesterday; at one point I will happily use the expression ‘could not move’ and for once literally mean it. I was whimpering on the sofa and for once it wasn’t even pain or fatigue, it was as if my brain and body just stopped communicating – I tried to sit up and it just didn’t happen. Several times. So I gave up and went back to sleep for a few hours. I feel a LOT better today. Think it is some combo of fighting off a cold, post-rituximab tiredness, dropping pred a little bit (have slightly tweaked the drop to make sure that doesn’t happen quite so dramatically again), and travelling back down/being awake for too long the day before.

I have noticed this before and this morning confirmed it; the rate my hair is falling out definitely increases on bad days like yesterday. The below picture is a little bit ick, but please be reassured that this is all clean head hair, salvaged before it went anywhere near the plug, so as to appease The Dad, Guardian of the Mysteries of the Inner Workings of the Shower Drain. So yep. When I say to people that I am losing more of my hair every day – admittedly it isn’t this dramatic every single day, but this is what I am losing most showers.

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The fact I still have a reasonable head’s worth of hair is solely testament to how stupendously thick my hair was to begin with, as this has been going on for two months now!! This is by the way (it should go without saying) not the result of any kind of deliberate pulling my hair out.  I am much more gentle than previously with the shampoo and conditioning, and since it got chopped shorter haven’t bothered with the hairbrush (I dabbled briefly), as it comes out just as easily running my fingers through it.

As a final blehhh for today, featured pic and below is the fabby poster designed by one of my Vasc UK buddies for the fundraising Little Broo is planning in May. If you have not already done so, I would greatly appreciate you donating even as little as a quid through the JustGiving link: Toetally Awesome The charity means a lot to me and many other people; Vasculitis covers a multitude of related sins and yet still manages to be pretty blinkin’ rare. This makes a diagnosis all the more difficult and stressful to deal with and learn about, and the charity is an absolute lifeline.

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Spanks!! xx

Kath is confused about her mental state, has just had a whole load more drugs, and is trying hard to deal with using the Oxford comma :/

Having an unusually chipper few days – first time in a long while I have both thought about updating blog and then followed it up with settling down with laptop. A little bit of this I am attributing to the cheesiest radio station ever – Tom found it whilst doing the first layer of painting at my new house!! Mega 90’s/early 00’s tunes!! Smidge cheesetastic… It is the kind of stuff I was dancing my arse off to when at Uni/writing essays/would lose my mind if someone snuck into a dj set 😀 I should probably be ashamed, but I’m not.

A few weeks ago, I was prepping (as much as one can!) for the formal meeting decision; the outcome was a warning on my file and five days to appeal it. I was imminently due to go back up home for Mum’s birthday… I got the train home for her birthday, which was technically successful, but only really with Fave giving me a lift to the station and a very nice gap between trains at Lancaster, enabling a few metre stagger into waiting room and the next train arriving in the same place over 45 mins later. The looming appeal overshadowed it a lot and made me have weird anxiety dreams. My current repeating one has been creepy old men with long white beards looming at the bottom of my bed and making me wake up screaming (at least in my head :/ Not sure if I am actually screaming out loud…) and with my heart going like the clappers. This means I then stay awake for ages wondering if my body is waking me up through the medium of dreams because I am a) having a heart attack b) have a clot flying around somewhere c) kicked an ischaemic digit off the wall (THIS one has happened before!). Anyhoo, last time I was at home, I was putting together points for an appeal and fretting about it a lot whilst procrastinating massively and stewing about the deadline for handing it back in… Mum ended up making me stash my laptop away and CHILL OUT, as I was probably doing her nut in 😉

I have now come full cycle and am BACK in Scotland for a few days post-hospital (standard craic). Both times the cat was obviously delighted to see me. That should go without saying… First time first though. I had a few days of just myself and parents, then picked up Little Broo and his lady. It is those two who are running soon in the Edinburgh Marathon for Vasculitis UK. DRESSED AS UNICORNS!!! DONATE FOR KATH POINTS! Seeing them was awesome, even if they did have a little bit too much joy in their faces at the thought of a ten mile run in the rain, up a hill.

JustGiving link for Toetally Awesome!

Fester was being a bit of a git, so the day after getting home I ended up getting some email advice from my consultant and GP, and getting a course of antibiotics from local Scotland GP.

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Local GP has an AWESOME sunny waiting room!!

This ended up being x3/day for 13 days, because typically it didn’t clear up within a reasonable period. That would have been so surprising and unusual that I wouldn’t have believed it anyway, so 13 days was always going to be the case! The nice news is Fester is currently not oozing and I have so far got away with having an active local infection WITHOUT BEING HOSPITALISED!!! *high five, high five, high five* – I have had nervous moments galore since then and have now got a ten day stash of co-amoxiclav (same one) to start if he kicks off again. Voldetoe also being a dweeb. Constantly sore and ischaemic now for over 15 months but never really yet gone properly mental. Freaked out the other morning as he was being rather sore and noticed large black spot on the end in the shower. Black on my toes means necrosis, which means heart sinking and life flashing before my eyes and assuming the rest of my life in hospital;8 I essentially managed to talk myself into a complete state within the duration of one shower… My will was getting amendments made, I was working out how to self-amputate if my Doctors refused… Get out of the shower and line up all of the antiseptic wash, gauze for cleaning, medi-grade manuka honey… Turns out it was some black fluff that had resisted the shower 😀 It was both funny and a bit alarming to see how quickly I lost the plot over a bit of fluff :/ My toes are getting a ridiculous level of attention anyway. Checked at least once a week by practice nurse at local GP and twice a day I am checking them, cleaning and smothering in manuka. It is quite weird putting honey on your own toes all the time. It smells bloody good, but by the time I manage to get downstairs, I keep forgetting to have honey for breakfast. Ooo and Kevin remains fine and dandy – a lot of sensation in the end of the stumpy bit, actually more than the ends of my other toes given how much damage they have accumulated!! Maybe all round amputations is the way to go and just have ten stumpy bits!!

This radio station is awesome… Its the kind of music that I get excited at every single song and everyone else winces at and makes cut-throat gestures to whoever is in charge of the tunes. I miss music so much!! Its like that weird feeling where you feel alone even when you are with other people; I feel like I don’t have music in my life at the moment, even though it has always remained to hand. I think a massive part of that is not being able to dance, even just that casual dancing round the kitchen that was always a standard part of my day! I got out of the habit of having radio etc. on when in hospital for so long and when my old laptop died I lost a LOT of music that I had accumulated over many years. Only just now rebuilding my youtube faves lists and being awake long enough to bother turning anything on. Also finding I am ever so slowly getting over the sulking from missing SO MANY parties and events over the last seven or so months. Even just going out and getting some live music used to be a very regular thing for me and got steadily more and more impossible as the literally five minute walk to my fave pubs became an insurmountable obstacle!

Anyway… For Momma’s birthday, some Aunts/Uncles/baby cousin etc. all gathered for extended partying and food – and! Exceedingly Tall Broo came home 😀 😀 Little Broo went for some carrots or something and came back in with a really tall, really smelly and very tanned older younger brother! The little gits had been planning it for MONTHS to coordinate him coming back from the US as a surprise. He had even gone to the extent of ‘going off grid’ in case Mum used the whatsapp locator function to make sure we didn’t realise he wasn’t in Washington State but actually nearing New York for a plane home! He had a helluva faff sorting planes and trains back but arrived eventually and some of us maybe cried a teensy weensy bit… He has since come down to my house with Dad and spent a few days painting my NEW house – freshly plastered almost everywhere, so needs a LOT of layers of boring white base coat. He is doing well so far, earning his packed lunch each day but wanted talking to… :/

Mum’s actual birthday was pretty awesome! She had a pretty good idea she was getting a party by that point, as Dad had wanted to do it as a surprise, but I made him confess as anything else would have resulted in a divorce due to the unready state of the house for many houseguests and many many visitors on the Saturday night. A huge amount of food was made and brought and it was all AMAZING – I did that thing where you eat so much you go into a coma, which tied in nicely with the energy floop. I had to fall asleep flat on my face a few times over the few days; talking to people and being constantly excited and enthusiastic is draining! It was also quite emotional as well, with Big Little Broo being home, baby cousin being utterly edible and some very thoughtful and lovely words from my parents’ friends regarding how ill I have been. It was something I had been dreading a little, knowing everyone would know to a certain extent and that they would be happy and curious to see me semi-recovered and have questions… and knowing how knackering I find talking and sustained ‘human-ing’ right now. But it was actually just very nice – no one said anything that made me think they were being ignorant or thoughtless, several of them were talking about having read this blog and had lovely supportive things to say about particular things I had experienced, or shared stories of them being in hospital or having chemo etc. It made me very proud of my parents in a roundabout way for being the kind of people who attract such lovely friends 😛  🙂  SMUG KATH!!! Also went to see Beauty and the Beast whilst up in Scotland – didn’t fall asleep, cried a lot and got all dreamy at the size of his bookcase!

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Once on the floor, easier to stay on floor. Knees NOT happy right now!!

One of the nice things about being back out of hospital and on slightly fewer drugs is being able to read again without the words going all swimmy in front of me. Being awake for longer than half an hour helps, as I can get a good uninterrupted stretch to get properly sucked into a story. I missed it so much – it has always been a huge part of my life, being so deep in a book that I don’t hear people talking to me and getting violently angry if someone (usually a brother) even thinks about touching my book… Probably because they used to chew them, or deliberately lose my place to enrage me. Gits. My newest fave author (also Fave’s!) is Laini Taylor, creator of the magnificent Daughter of Smoke & Bone Trilogy. Reading Dreamdark at present and it is absolutely beautiful. Teeming with sentences with real depth and a … I don’t know how to describe other than a tasty texture… When I am reading, the way the words sound in my mind has a flavour and tangible quality to them that books of a less fantastic quality just don’t manage! I knew it was amazing from the very first page; I like to think I can tell from one page whether or not someone has that particular trick I love. E.g. First line on a random page – “Daylight twinkled into twilight as the last slanting rays of sunset withdrew from the treetops.” MMMMMFFF! The downside to reading again is that for some reason it tends to give my depressive side a nudge. Or maybe I read more because I feel a bit more gloomy? Maybe introspective is a better word; I don’t know. I had a bit of a spell of worrying about all the work meetings and getting pissed off that even though I am out of hospital, I still can’t do anything like as much as I want to physically – even when I would have thought I have already massively lowered my expectations 😦 Some days I am shattered by the time I have had breakfast, which is a bit ridiculous… I keep getting cheesed off as well at still feeling stiff and achy all the time. I think I am focusing on that more without dying toes being the dominating pain, but less morphine maybe also not helpful 😀 Sadly staying on stupid levels of morphine not an option, as not only does it make my brain mushy and isn’t safe to be on longer term, but it also will be masking all sorts at that level, and I need to know when things are kicking off to identify what this stupid twatty disease is up to.

I got a lift back down after the birthday weekend and got my appeal letter submitted, then got an invite for a meeting to discuss/present my case. Thankfully my brill Union rep was free to come with me to this one, as it is horribly stressy anyway, but knowing my tendency to run out of brain mid-sentence, the thought of a formal meeting solo has become pretty nasty. Meeting is over anyway and now just waiting for a result of some sort, once it has all been looked over. The weather has turned much more spring-like – and I have now had actual proper sunshine AND ice cream!! I had a crazy good day one day (maybe took too much pred or morphine??) and went for a wander at two and a half year old/very pregnant Aunt pace through the Priory woods. Was very very bad the next few days, but it was kinda worth it to get some fresh air, and to see genuine flowers and all the wild garlic down there. I have been a bit grumpy about the boom/bust cycle – with all the treatment and new things happening drug/pain wise, I have no idea how something will impact me at the moment a few days ahead. I am trying to be careful but also wanting to take advantage of the good days.

I did this one day and went to the big Tesco for the first time since September, but it was a bad idea. I took my disabled parking badge and used it, anticipating that even having a good day, I would be knackered after a shop. Not something I have done very often at all, for the simple reason that it arrived once I was already in hospital and since then I have barely ventured outside/been able to drive. Driving is a pretty new thing for me again! I parked just round the corner from the door, got out and was making my way in and a old man sitting in the passenger seat of a car in a different disabled space started shaking his head at me, glaring and waving his finger and pointing at my car and then me. My first reaction on catching sight of him had been to smile at making random eye contact, because I am that rather creepy person 😉 Then when I realised what he was on about, I firstly decided I was imagining it, then thought I would shrug it off and pantomime asked him “CAN I HELP YOU WITH SOMETHING?” He glared away and down when he realised I was staring back at him and had stopped… Not sure if I really looked threatening, but that was essentially how he reacted 😀 Anyway. I got into Tesco aaaaaand promptly burst into tears. Howled my way around the entire upstairs level. Whole point had been to get a printer to finally sort out all of my doc notes and emails, but ended up taking a lot longer… I called Fave and was crying so hard she couldn’t really work out what the problem was, but I was also kinda laughing at myself at the same time, as I knew I was being a little bit dramatic. It reminded me of the scene in Anchorman when Baxter has been punted off the bridge, and Ron is on the phone… In his “glass case of emotion” 😀

Classic scene! I was basically saying the words “mean man” and snotting a lot. This obviously made for a massive emotional wallop and by the time I got out of Tesco (lovely lady helped get the stupid printer to the car), I was a complete mess. I then cleverly didn’t go home and rest straight away, OH NO. I went and stress-bought (as opposed to stress-eating) more fish :/ I have very weird stress reactions. This is maybe the third time I have reacted to stress by buying fish or plants for my aquarium. Yes, I am a bit unhinged. But aye. It was horrible knowing that I was letting someone get to me so much about it; I think I have a level of underlying ‘guilt’ or a fear of being a fraud still. That is despite many many people reassuring me about this many times. The most hateful thing about it was the fact that I hardly ever use the bloody thing, even when other people are driving and before I dared drive myself again, particularly because I am always worried about whether or not I am in some way ‘taking the piss’ or ‘faking it’!!! The last thing I needed was some mouldy old bastard making me feel shit about it. It is hard enough as it is feeling crappy all the time, constantly trying to walk as normally as possible so you a) don’t look weird and b) don’t do even more damage to your joints/muscles. Oh yes, was not using a stick as PHYSIO HAD TOLD ME NOT TO IF I COULD AVOID IT. No stick, under the age of 80 and not in a wheelchair… So clearly not disabled yep? Crusty git. I have since had to deliberately make myself suck it up and do a cost-risk analysis based SOLELY on how I am feeling/distance involved etc. each time I have left the house/needed to park.

Other fun moments of anxiety/depression surfacing lately have included isolating myself in the house for a few days, as I was too scared to take the first one of my new daily MMF aka mycophenolate pills (I think of them as ‘chemo-lite’ when compared to the cyclophosphamide…). Reasoning for that being I didn’t know what the side-effects would be :/ Even though the most likely one was puking or stomach cramps, I essentially convinced myself that the world was going to end and stayed in sulking and avoiding making eye contact with the box. Ahhh the joys.

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Evil box…

I am a few weeks down now and nothing particularly exciting has happened. The only stomach cramping was nature being a git. Oh yes. TWICE IN ONE FRIGGIN MONTH. Nearly. I ate an entire bag of mini eggs for breakfast one day. That was a significant clue. Recently had my first physio app and the woman was really lovely; really good grasp on what it has all meant for me, regardless of the unknowns for me re specific diagnosis. I did a little walk up and down for her and she agreed that my foot muscles have gone a bit strange from trying to keep my toes up (sub-conciously) so I don’t touch them off the floor… Also that yes, using a stick is helpful when I am very bad on one side or having an unpredictable shhhlumpy day or super tired… But longer term, thinking about muscle wastage and damage from being lopsided etc., handier to not use it where possible, even if that means I am a bit slower. More important to try and walk ‘normally’ again, although she did confirm that most of what I was instinctively doing when I was learning to walk again post-amputation was exactly what she would have been advising. I already do a lot of foot flexing etc., but the thing I hadn’t appreciated was that when my knees are being horrific, you can’t strengthen a joint… You need to basically make the muscles in upper leg stronger to support the movement of the knee. That is maybe not technical jargon, but yep, even if I am having a naff day, I need to try and do even very basic movements each day, preferably several times a day. They aren’t exercises as such, more like making specific muscles work, which thankfully I have found I can do without putting much strain at all on my back or knees. The worst bit is actually getting up again when I have been lying down haha 😀 It is seriously hard; involves a kind of three point, three directional manoeuvre with swearing and hauling on end of the bed/sofa/chair etc. Really not my most elegant moments!!

Still got many, many doc appointments each week. Earlier this week I had some nice news re blood results (bone chem profile, full blood count, LFT’s, long term sugar check, cholesterol etc. – everything!!!); nothing new to be alarmed about and my LFTs are currently only approx. 1.5 – 2x normal adult range ‘max value’ instead of the 3 – 4x that they were in Dec when they peaked! As a comparison, since early last year when I started to get worse, those results started to climb from usually being at the low end of the normal range to the December high when I was exceedingly not well 😏 They have fallen very slowly but consistently downwards since then, getting checked every couple of weeks. As a reminder for those who maybe doesn’t already know, blood tests are definitely not a reliable marker for everyone – and I personally don’t tend to have very reliable results in terms of reacting when I am very flared or infected – or showing ANCA or raised CRP or any of the other NORMAL bloody indicators of the disease I have!!! – but I spent a long time being told that my blood tests showed NO signs of me being ill, only to find that that was absolute garbage. To have a visual marker of something improving month by month is so nice amidst all the crap. For this to be happening despite dropping pred slowly since I left hospital is very nice as shows that it is genuine improvement; maybe a tentative sign that the rituximab and the cyclophosphamide are doing something??

The other nice medically type news is that my hip biopsy site is now healing slowly (month and a half on!) with no sign of infection at present!! This is likely to be vastly sped up by the recent removal of four so-called DISSOLVABLE STITCHES… For whatever reason, my body just does NOT dissolve them. Doc thinks it is one of those interesting quirks that make me a medical weirdo/maybe something to do with my immune cell reactions to foreign objects being compromised… Same thing happened with the Hickman’s Line stitches – I ended up pulling them out myself, when the wound had basically healed around them. Left with a flippin HUGE scar 😦 The problem with biopsy site was neither myself nor practice nurse (until the other day at least) had realised there WERE any dissolvable stitches involved!! Given the 10m (approx.) of normal stitching removed over a month ago, having anything else involved smacks of overkill. So yep. Drugs slowly reducing a little/balanced by the new MMF… Doing the upcoming fortnight looks like this + paracetamol + warfarin 😛 Still takes over an hour, but economies of scale in having purchased second weeks worth of boxes!

Have just come full circle; back in Scotland having just had my third ritux infusion – featuring overnight stay – in Carlisle hospital, and heading back down tomorrow. It was very nice to see staff I know and like again, and I didn’t have any interesting allergic reactions. Yet. I have at least a month’s worth chlorophenamine on standby in case I get that fecking itchy rash all over my arms/face/back/chest again. Watch this space… 😛

Kath gets up close and personal with the sofa; being home is exhausting and being ill is both very frustrating and incredibly complicated to organise. ***Lots of sweary ranting… and a beautiful pic of Death Toe remnants***

I haven’t really been getting the urge to do an update because I’ve been rather busy doing… Not a lot… What follows is a rather epic rant, so many of you may not really be too arsed about reading this, but frankly I am rather furious at the world, and my options are vent in writing or break things and I am not strong enough to break much more than a tissue at the moment 😀

I got home – e.g. back down from Scotland, from my parents’ house, a wee while back. End of Feb to be exact! Since then, I have had… Seven Doctors appointments in eight days. Two dressing checks, a GP appointment, full bloods for cyclophosphamide monitoring (which amounted to many many vials, including INR) and another three appointments solely for INR bloods. It is insanely confusing trying to remember all of these, even when they are all written down in my diary religiously. Which may sound ridiculous, but please remember I am utterly shattered and have for about six months been in hospital sticking my arm out at least once every four hours for a blood sucker or cannula or someone taking my bp. So when I cancelled an appointment a while ago WITH A FEW DAYS NOTICE – not even the one I thought I was in trouble for missing earlier on when all this was “kicking off” (my definition of kicking off has become decidedly more medical haha) – and added a note on the system saying ‘still in Scotland, INR test being done here’, I didn’t realise it was another strike against me at the local GP centre, as it was apparently a VERY IMPORTANT APPOINTMENT where you get set up on the stupid special INR system.

The other strikes against me having been because of the first time I was taken off the warfarin (in December) because I needed an operation to remove the hickmans line and my old genius Doctor (so much sarcasm. So so so much) had started me on warfarin a week beforehand: STRIKE ONE. Next, due to begin warfarin again in the New Year and got taken into hospital – urgent admission through A&E, cancelled online with a few days notice: STRIKE TWO. The next time it was discussed, I was flatly told that the local GP practice refused to monitor me and it had to be done at the hospital. Then the hospital said they wanted epic amounts of detail about my condition and why I was to be started on it and yadah yadah. A letter from my consultants at Addenbrookes was not deemed sufficient… So there was much bickering ongoing to sort this out and in the meantime, I was admitted urgently again and sent up to Carlisle… and my new genius Doctor (no sarcasm) was kind enough to finally get me cracking on the anti-coagulation juice in mid-Feb.

This went perfectly dandy, including me being tested to death and monitored in Scotland, until I got STRIKE THREE which was missing this VERY IMPORTANT APPOINTMENT. So I have had all these millions of blood tests in the past eight days and no one has actually been in charge of monitoring me. My GP is actually very wonderful and has essentially arm-twisted the practice nurses, who are all also individually wonderful, into setting me up on the system, probably helped by the fact they have been taking my bloods for the past few days and were seeing me attending appointments and diligently filling in my stupid twatting yellow book. I now have been told I have a new VERY IMPORTANT APPOINTMENT and that I absolutely cannot miss it as it is the last one available this month and if I miss it I have to go to CARLISLE!! to get set up on their INR twatting system and have all my blood tests sent up there… WHAAAAT??????? [To clarify, I am the one keeping track of the strikes… No one has actually bollocked me using the word ‘strike’ for a while, but I am aware fully of the incidents they are remembering and feel very aggrieved!!!]

Bahhhh. I have a trip back up north planned soon for Mother dearest’s birthday and it has basically turned the travelling for that into a bit of a complicated git, needing to be back down and rearranging all of the stuff I had arranged already with the GP practice in Scotland. My diary is disorganised chaos and everyone thinks I am horribly unorganised (I just googled the difference: DISorganised means thrown into disorder and UNorganised means not organised!!). I am in a shitty mood about it all and had an angry cry in the middle of a shop haha – Ooo! I actually saw humans – in real life – in the town!!!! For the first time since SEPTEMBER! – I drove, although admittedly literally two minutes – and went and did adult things like the Co-op for a bottle of milk and Costa for a chai latte (mmmmmm) with a friend I haven’t seen in months. It was lovely and the stupid INR crap has dimmed its brilliance 😦 Also starting to get fretty about Friday as I have the formal meeting reconvenement at work and I have to drive or pay £20 for taxis – that is basically the main reason for wanting to get a practice drive in today (and likely a slightly longer one tomorrow). It is a stupid mix of being happy for a chance to see my work colleagues and being upset about the whole being off work and formal meetings and having to essentially have yet another aspect of my life crapped on by being ill.

Being home has been nice for having my own bed back… and seeing my fish!! My shrimp is a handsome little dude. Most importantly, seeing my friends. I have had only a few weeks at the most since September actually being in my own house, as most of the recuperation time when I haven’t been in hospital (maybe five weeks in five months?!) has been spent up in Scotland! When not in the twatting GP surgery getting blood sucked out of me, I have been either sleeping or taking drugs. In the middle of all this I have finally managed to get some catch-up time in, including Giant Hound time 😀 I also (against the strong hintings of both Mother dearest and the accompanying friends…) went to the Vasculitis UK symposium in Manchester last weekend. This was amazing, partly for things like seeing that cars still existed – and tall buildings always excite me, as I am a country bumpkin 😉 But the singing in the car – mmmm! – and the hotel room with the giant tv and the kettle!!!

I managed the whole Saturday conference part, with some pretty informative and emotional presentations. I cried quite a lot and I wasn’t the only one. Meeting people I have been talking to online for so long was incredible and it was also a very useful chance to learn more about other people’s experiences and types of vasculitis. It covers so so much – essentially any blood vessel network in the body can be affected; lungs, heart, brain, skin, kidneys… Some very inspiring and motivational stories, particularly from the youngsters that shared their experiences. I didn’t manage the ball in the evening: I got all dressed up with Inside Friend and Fave, who had accompanied me and were equally as giddy about hotel room shenanigans 😉 and we ate a magnificent feast with a bit of serenading, and then I crashed and was asleep within about half an hour 😀 I did manage to get my pjs on and brush my teeth though 😉

*****UP CLOSE PICTURE BELOW OF WHAT AN AMPUTATED TOE GAP LOOKS LIKE – NOT AS GORY AS YOU WILL BE EXPECTING AND HE HAS A SMILEY FACE WHICH MAY AMUSE YOU, BUT STILL CONSIDER YOURSELF WARNED*****

As much as the pain I am dealing with day to day is so much less due to Death Toe being a goner, I am now having to deal with the rest of the condition being noticeable again, which has remained largely unchanged for over two years now. I first was aware of being unwell in December 2014 and that is about when my toes started to try and die. I have had daily joint pain, muscle aches, fatigue and brain fog since then, although to a certain extent it wasn’t so bad that it was impacting my day to day life and mobility until early 2015. So yes, Death Toe is gone. Speaking of, he has been replaced by Kevin Spacey (as named by Dad), who looks suspiciously like a vampire smiley face… Apologies for how close up Kevin is. I can’t make it any smaller and wordpress is not being cooperative. Kevin has at least healed well. Basically the only thing that has gone as planned in the last two years was that amputation!! The biopsy I had two days later… Not so well. Still a huge gaping wound in my hip and still requiring dressings and getting suspicious glares from the practice nurses, a month after being gouged at. Being ill is super fabulous in case anyone had missed the hinting earlier.

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Now Voldetoe has taken over as being a painful twat that is threatening to be infected. I remain off work six months on, on the advice of my Doctor, as I need yet more toxic crap thrown at me and get to start new drugs with new exciting potential side effects. Woopee. This is a very grumpy post. Kath is in a shitty mood. I am very chuffed to not be in hospital and to have my friends close to hand, but really… I am minus a toe and have precious little going for me day to day at present except taking drugs at regular intervals and attending appointment for people to suck my blood and get told off/sanctioned/isolated from society and have my stupid hair falling out at a stupid twatty rate, all for being medically weird.

Regarding hair falling out, one of my fabulous friends came and lopped about 50% of the remainder off for me a few days ago, as when it is long and straggly and falling out in handfuls it is even more depressing than short and falling out in handfuls. I thought I would be bawling my eyes out, but having a few of my buddies round making me giggle and making moustache faces on the floor with the choppings was sufficiently distracting and I managed the whole event without howling. Yes, I have a huge amount of hair left, but trust me when I say I am having handfuls coming out each day. Anyone who wants to get offended about me discussing this, because I have fabulously thick hair still and shouldn’t be complaining – or who thinks chemo is just for cancer – can come round and I will cram my moultings down their ignorant necks. Oooo agressive angry Kath !! I’ve dropped to 9mg of pred this week, I should be getting progressively more sweet-tempered – how confusing!!! 😀 Also about to get more toxic sludge in the next few weeks, although as not cyclophosphamide, not AS bad on the hair fally-outty front… But I am still only about six weeks from dose ONE and it says three to six weeks for hair loss to START on all the cancer websites 😦 Mine began after about ten days!!!

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I also get to go up to Carlisle again soon and get incarcerated for more rituximab because I got that nasty itchy rash all over me last time and may have an even more exciting reaction this time… At least Death Toe gave me a very specific focus for the hatred and the anger. Now I am hating Voldetoe; everyone is welcome to jump on board the hating-wagon.

Ahhh – the good news? I get pumped full of chemo drugs that are very likely to have made it impossible for me to ever get pregnant safely – and what happens? My shitting periods have started again, after taking a few months off and worrying the crap out of me. Thanks body. Very sensitive timing.